MILWAUKEE — This June, during Alzheimer’s and Brain Awareness Month, the Alzheimer’s Association is revealing insights from people living with early-stage dementia and what they wish others knew about living with Alzheimer’s and other dementia.
Many Americans struggle with what to say and do when a family member, friend, co-worker or neighbor is diagnosed with Alzheimer’s or another dementia. The Alzheimer’s Association recently asked those living with early-stage Alzheimer’s and other dementia what they want others to know about living with disease.
“The stigma surrounding Alzheimer’s and other dementia is due in large part to a lack of understanding of the disease,” said Wendy Betley, senior program director, Alzheimer’s Association Wisconsin Chapter. “These personal insights from people living with early-stage dementia highlight common disease-related stigmas and provide valuable guidance for improving how we can support and engage these individuals.”
During June, the Alzheimer’s Association is also inviting Wisconsin residents to participate in The Longest Day on June 21. Held annually on the summer solstice, The Longest Day invites participants to fight the darkness of Alzheimer’s through a fundraising activity of their choice.
Throughout the month and culminating on June 21, Longest Day participants will bake, bike, hike, golf, knit, play bridge and participate in other favorite activities to raise funds and awareness for the care, support and research efforts of the Alzheimer’s Association. For more information and to register: visit alz.org/thelongestday.
Six insights from early-state dementia and what they wish others knew about living with Alzheimer’s and other dementia:
1 My Alzheimer’s diagnosis does not define me. Although an Alzheimer’s diagnosis is life changing, many living with the disease say their diagnosis does not change who they are. Many diagnosed individuals say they want to continue doing the activities they enjoy for as long as possible.
2 If you want to know how I am doing, just ask me. The sudden change in how others communicate with someone recently diagnosed with Alzheimer’s or another dementia is a frustrating experience for many living with the disease. They say avoiding or side-stepping direct communication only makes them feel more isolated and alone.
3 Yes, younger people can have dementia. While the vast majority of Americans affected by Alzheimer’s and other dementia are age 65 and older, the disease can affect younger individuals.
4 Please don’t debate my diagnosis or tell me I don’t look like I have Alzheimer’s. While family members and friends may be well-intended in attempting to dismiss an Alzheimer’s diagnosis, many living with the disease say such responses can be offensive.
5 Understand sometimes my words and actions are not me, it’s my dis ease. As Alzheimer’s disease and other dementia progresses, individuals can experience a wide range of disease-related behaviors, including anxiety, aggression and confusion. Diagnosed individuals say it’s important for others to recognize disease-related symptoms, so they are better prepared to support the person.
6 An Alzheimer’s diagnosis does not mean my life is over. Earlier detec tion and diagnosis of Alzheimer’s disease and other dementia is enabling diagnosed individuals more time to plan their futures and prioritize doing the things most important to them.